DISPLACE: Dissemination and Implementation of Stroke Prevention Looking at the Care Environment

项目摘要 缺血性中风是镰状细胞病(SCD)的一种潜在的可预防的破坏性并发症，一组 遗传性血液疾病在美国影响着近10万人。如果不进行干预， 中风可能发生在高达24%的具有SCD最高风险形式的个人中，即镰状细胞性贫血。尽管 改善儿童SCD的综合护理和管理，中风仍然是主要原因 筛查和预防措施不足造成的发病率和死亡率。患有SCD的个人 继续面临种族和社会经济因素以及疾病造成的多重健康差距-- 资金和私营部门支持方面的具体差距。为了规范和改善护理，国家 心、肺和血液研究所(NHLBI)在2014年发布了循证指南。这些指导方针 建立常规经颅多普勒超声(TCD)筛查作为识别高血压病儿童的手段 卒中风险和无限期慢性红细胞输注(CRCT)作为治疗高危儿童的一种手段 基于之前NHLBI资助的随机对照STOP(镰刀卒中预防试验)的卒中 细胞疾病)结果。这项题为《置换(中风的传播和实施)》的提案 预防看护理环境)是一项多地点的努力，重点是加强实施 并在SCD中传播这些循证中风预防指南。研究方法是 在传播和实施的互动系统框架和多层次指导下 健康的生态模式。南卡罗来纳医科大学的置换领导核心是 由朱莉·坎特博士、罗伯特·亚当斯博士和凯西·梅尔文博士领导的多学科团队包括 多中心临床试验设计、血液学、实施科学、定性分析和 统计评估。MUSC的数据协调部门(DCU)协调了40多个多中心 研究并将提供研究设计和信息技术支持以及数据管理支持 领导核心。置换的目的是：1)评估当前与指导方针之间的差距- 儿童SCD患者卒中预防的推荐做法，2)多水平评估 患者、提供者和系统阻碍执行TCD筛查和启动CRCT，以及3) 评估一种新的多层次传播和实施战略的有效性，以增加当前 采用平行整群随机临床试验的年度TCD筛查率和CRCT启动率。我们 汇聚了分布广泛的机构组成的大型多机构协作组织 以最佳方式评估多层次实施战略的可行性和实用性。的长期目标是 置换是为了确保所有患有SCD的儿童接受基于指南的中风预防护理 SCD中的“无卒中一代”。

Project Abstract Ischemic stroke is a potentially preventable, devastating complication of sickle cell disease (SCD), a group of inherited blood disorders that affect close to 100,000 individuals in the United States. Without intervention, stroke may occur in up to 24% of individuals with the highest risk form of SCD, sickle cell anemia. Despite improvements in comprehensive care and management of SCD in children, stroke remains a major cause of morbidity and mortality due to insufficient screening and prevention practices. Individuals living with SCD continue to face multiple health disparities cause by racial and socioeconomic factors as well as disease- specific disparities in funding and private sector support. In order to standardize and improve care, the National Heart, Lung, and Blood Institute (NHLBI) released evidence-based guidelines in 2014. These guidelines established routine transcranial Doppler ultrasound (TCD) screening as a means for identifying children at high risk of stroke and indefinite chronic red cell transfusions (CRCT) as a means of treating children at high risk for stroke based on the previous NHLBI funded, randomized controlled STOP (Stroke Prevention Trial in Sickle Cell Disease) results. This proposal, entitled DISPLACE (Dissemination and Implementation of Stroke Prevention Looking at the Care Environment) is a multi-site effort focused on enhancing the implementation and dissemination of these evidence-based stroke prevention guidelines in SCD. The research approach is guided by the Interactive Systems Framework for Dissemination and Implementation and the multilevel ecological model of health. The DISPLACE leadership core at the Medical University of South Carolina is a multidisciplinary team lead by Dr. Julie Kanter, Dr. Robert Adams and Dr. Cathy Melvin and includes specialists in multicenter clinical trial design, hematology, implementation science, qualitative analysis and statistical evaluation. The Data Coordinating Unit (DCU) at MUSC who have coordinated over 40 multicenter studies and will provide study design and information technology support and data management support the leadership core. The aims of DISPLACE are to: 1) assess the gap between current and guideline- recommended practices for stroke prevention among pediatric patients with SCD, 2) assess the multi-level patient, provider, and systems barriers and enablers to performing TCD screening and initiating CRCT, and 3) evaluate the effectiveness of a novel multi-level dissemination and implementation strategy to increase current annual TCD screening rates and CRCT initiation rates using a parallel cluster-randomized clinical trial. We have assembled a large, multi-institutional collaboration of institutions with widespread geographic distribution to best assess the feasibility and utility of the multi-level implementation strategy. The long-term goal of DISPLACE is to ensure that all children with SCD receive guideline-based care for stroke prevention for a “stroke free generation” in SCD.